Monday 30 December 2013

2nd of pevious MSS boards Antibiotic post

whammel
30 Dec 2013 at 1:45PM
nindancer wrote:
After the time my GP told me that antibiotics were causing a physical nervous breakdown, I've avoided them like the plague, not funny when you start getting mysterious lumps and bumps. I didn't exactly overdose either, just a few courses in quick succession did very bad things to me.
It never ceases to amaze me how the "evangelists" seem to lose sight of the fact that MS is the enemy and not the methods we choose to treat it. I like what works and that often depends on individual circumstances, as your unpleasant experience clearly proves.

Nothing is straightforward with this pesky condition.

bandekafsh
30 Dec 2013 at 2:03PM
Hi Supaguy68,
I watched the YouTube video with great interest. Sarah's recovery is remarkable. It reminds me of the controversy over antibiotic treatment for stomach ulcers, and of the fact that every medical assumption can and should be challenged. The bacterial infection theory looks well worth following up. There will be resistance in the medical establishment, of course, but a serious large-scale trial should eventually conquer that resistance - if it can ever be funded, which I think is doubtful. 
So: thank you for bringing this stuff to our attention! Your excitement about it is understandable, as is your anger and frustration at the lack of progress with effective treatments for progressive forms of MS. 
I'd like to address a few of your points in more detail.
"I am Primary Progressive.  Nobody in the pharmaceutical industry is working on people like me." 
This is untrue. There is currently a lot of research work going on to find treatments for PPMS and SPMS. Maybe you haven't noticed it yet. It's well documented on the MS Society's website and publications.
"I have compared them to someone who is laying with their legs sprawled across a level crossing.  Even though they don't have a train timetable ... they know the train is gonna come ... and they know what it's gonna do.  I say "Get up!  Get off those tracks NOW!""
This is a very poor analogy. Death by being run over by a train on a level crossing is a sudden and very destructive business, whereas Progressive MS, as its name strongly suggests, is a progressive, a gradual thing and does not lead to a sudden instantaneous death. It's also unclear in the analogy what 'get off those tracks' translates to in terms of action in real life for those with MS.
"A decision has been made to boycot this thread en mass."
Do you have any evidence for this? How do you distinguish 'boycot' from 'reading without contributing'? I don't think you have any grounds for the assumption that this thread is being boycotted.
"Glad to learn that there is someone else here with enough gumption to get up while they can and get the ... out of the way of that that express steam train that's bearing down on you like a fire-breathing reaper."
This shows a level of rudeness not acceptable on this forum, and not justified by your clear anger about your situation and your perception that others do not share your point of view. 
"Sarah is not following this thread and will not be following it.  If you really want to know why I will post the link to show the descussion but she said that she found the people here just so rude."
I have always found these forums to be very courteous. The only rude contributions I have noticed in recent years have been your own, in this very thread. This is highly ironic.
"Maybe you are not deemed clever enough to discern valid comment for yourself. Ah well  ...  this is what you have all grown to accept!"
This is the type of rudeness I mean. I acknowledge that you feel excited, zealous, indeed, about the course of treatment you have embarked on, and I wish you well with it. But your excitement, and perhaps also your frustration, do not give you license to adopt a sneering tone, to denigrate and insult other members of this forum who may take a more cautious approach than your own, or who simply disagree with you. 
Regards,
Chris
 

Antibiotics no no no, what are the thinking, what madness is this!!!!!!!!!!!!

Combined Antibiotic Protocol for MS
Author
Post
supaguy68
16 Dec 2013 at 11:23PM
Hi All!
Anyone out there trying the Combined Antibiotic Protocol for MS?
Anyone seen the Catalyst video on You Tube showing MS cured called "MS Cure?"
http://www.youtube.com/watch?v=EpMvDe8-qsM
G
Snow Leopard
17 Dec 2013 at 4:25PM
No. Very wary of any so-called cure.
Scientists all over the world are devoting their work to finding a cure for MS.
Don't you think if a real cure had been found it would be publicised in medical journals and newspapers rather than on YouTube?
I will bet my bottom dollar somebody somewhere is laughing all the way to the bank.
Sorry but I don't believe it for a second.
Pat x
supaguy68
17 Dec 2013 at 9:41PM
Hi!
Oh, right ... "You're betting your bottom dollar" that someone's laughing all the way to the bank!  So are you betting?  Was this just a turn of phrase ... or are you actually gonna put some hard cash up?  Nah, I know.  You're not actually gonna bet any actually money.  You didn't watch the video either, did you?  If you had have watched it, you'd have realised that there IS NO MONEY TO BE MADE OUT OF THIS.  Just like LDN and other out-of-patent "orphan" drugs there's no money in it.  Drug companies and their reps will not be pushing this because they can't make a buck on the back of your illness.
I am Primary Progressive.  Nobody in the pharmaceutical industry is working on people like me.  I am going to do whatever I can for myself.  I would prefer my headstone to read "killed in action!" rather than "Never bothered trying".
I am always amazed at the attitude of many MS Society members.  I have compared them to someone who is laying with their legs sprawled across a level crossing.  Even though they don't have a train timetable ... they know the train is gonna come ... and they know what it's gonna do.  I say "Get up!  Get off those tracks NOW!"  (I can hear that distant echo "Oh, but there's no proof!")
Tonight was an MS night in my town (it'll have finished about twenty minutes ago).  I could have gone but didn't; I ask myself, "What's the point?"  They are good as a Tysabri Support or promotion group.  To me, I don't see the MS Society as a freeway for open thought, more as a guardian or The Gatekeeper of the Established Way.  This was the same MS Society that would have censored any mention of therapies (such as LDN) that did not meet the approval of their established diktat.  I suppose we have, at least, moved on from that (I hope).
G
Ninagrace7
17 Dec 2013 at 10:25PM
I'm with pat on this one!
If you google MS smart trail you will find there is considerable research being done on progressive MS!
I for one think The MS society is a wonderful charity I'm sorry it's not to your liking. Maybe MSUK would be more to your taste....they are always reporting so called cures.
whammel
17 Dec 2013 at 10:25PM
I think you must be confusing this site with another one, because alternative treatments are freely discussed here. In fact, Dr Wheldon's Protocal has generated a few threads, including contributions from his wife Sarah, who I understand has benefitted from the treatment.
What people are highly skeptical about is the word "cure", for the perfectly good reason that there is not one. Frankly, making ridiculous assumptions about other MSers is not particularly helpful and does you no credit.
Thorleif
17 Dec 2013 at 10:39PM
Makes you wonder? The one thing the film did not show, is what negativ effect will it have on the body to be on antibioticd for so long, the presense of bacterias in our body are quite important for us, if they get cleaned out, what will happen? But who are we to say that the theory is wrong?
supaguy68
17 Dec 2013 at 11:38PM
Hi
Firstly, as a paid-up member of The MS Society I am as entitled to pass comment as anyone else.
I note the suggestion that "Maybe MSUK would be more to your taste....they are always reporting so called cures."  Well, if there are "Cures" out there then it'd be good to here about them on here too.
Whamell says:
"What people are highly skeptical about is the word "cure", for the perfectly good reason that there is not one."
Wow ... that's a pretty grim: Zurich here we come!  Yeah, to say "There is no cure" not that we haven't found it yet or those that claim to have been cured have not been validated yet.  No: "There is no cure".  Well you just stay sitting on that level crossing then.  The protocol has been designed by expert doctors and have fully taken account of the risk of antibiotic resistance and the effects of the subject patient.
Regarding the long-term use of antibiotics, this issue has, naturally, been discussed elswhere ad nauseam.  There are two main aspects to that issue:
The impact on one's own body by continued use;
The impact  on our world by the use (or over use, as seen by some) of antibiotic medicines against pathogens that are not even proven to have been infected.
The handbook and guidlines issued by cpnhelp.org covers these and the other issues in great detail.  I started antibiotic treatment back in May; I take the probiotics as prescribed and haven't had a problem in this regard.
In terms of the emerging antibiotic resistance that has become an increasing problem over the last 20 years, I mused much on that subject.  I know that agriculture is where most of the antibiotics go (then into your food).  I gringe at the UNDERPRESCRIBING  of antibiotics by GPs and insufficient sub-clinical doses given out to patients powerless to argue; a course set to breed resistant pathogenic strains.
Anyway, my view is that if anyone can get better, good on 'em ... whether that be by act of God, Homeopathy, antibiotics or just bloody good fortune.
One other thing I will say is this:
If it were just and only Sarah Longland that had made a recovery, then I'd be writing this off as a fluke ... but it isn't just the one person.  A long while back, I posed the question "How many are there?" and a woman came back and said that not everybody checks in or post ... with some of us, we got our lives back and moved one.  We do other things now ... not posting about treating MS.
G
Moyna
18 Dec 2013 at 8:59AM
This is getting a bit heated. I have something which mimics ppms. It could be radiation myelopathy as I was told by private neuro in 2011. Or spms after benign ms since 1990, or in fact ppms. Second NHs neuro disregards first neuros opinion. Anyway last year I had a treatment of avastin which cost me £6000 as I read on Internet that it helped reduced lesions for radiation myelopathy. Anyway an MRI 6 months after the treatment the lesion had resolved. I felt so must better although the spasticity remained. When I told the NHs neuro that I had gone back to first neuro who had agreed to the treatment privately he was cross and said my MRI improvement was nothing to do with avastin and I had just got better myself. He was cross that I had returned to the private sector and discharged me from his NHs clinic! I went back to private guy this October as was starting to feeling ill again. I had another MRI done privately and the lesion had returned. Now I don't know whether the June MRI was correct and can't get anyone to verify that for me. If the avastin worked do I need more . I just don't know. I feel that I am controlling my own treatment.
MOYNA xxx
Min
18 Dec 2013 at 9:00AM
G your comments have hit a nerve in my opinion.  We are all individuals and most of us are intelligent, well read and mature.  To hint that we are unable to discuss or consider treatments available is not accurate.  We all know that we can't be cured and if you keep up to date with posts you'll see that we all have different ways of coping.  To compare us to someone lying on a railway track not wanting to move is quite insulting.
I'm very happy to try new treatment methods that I have read up on and think they have a realistic chance of improving my quality of life.  I was a nurse before this illness so I think I understand the effects things will have on my body.  I am a guinea pig trialling a new disc in my neck as it makes sense but I'm content managing my ms with symptom management.  That does not make me a coward, I didn't ask for this or want my body to fail but I don't believe there is a treatment currently available that will improve my current quality of life.
We're all different with individual ideas, symptoms and coping strategies.  I respect your aggressive management of your illness but take offence at you ridiculing mine.  Please show respect to those of us who have different views.
Cath

nindancer
18 Dec 2013 at 9:35AM
Just the title of this thread makes me think one thing - itchy!!!
I hate taking antibiotics with a passion, since as one GP put it "your nervous systems is breaking down" after getting over-done on antibiotics when I had an infected wisdom tooth (GP & dentist medicating me over a couple of months).
Anyhoooo, if a proven cure shows up then I'd probably take it even if it made my hair fall out! ;)
Sonia x
Thorleif
18 Dec 2013 at 10:19AM
Supaguy obviously upsets some, but after all, a Forum is for discussing and airing opinions and information, and I welcome his contribution. Of course most of us reacts strongly when we read about "Cure for MS", because so far there is no such thing, but if there ever is to be found one, no doubt that will come from an un-expected angle, and it will upset many, and the number of people believing in it will be small to start with. If people never looked at things from new angles, nothing would ever get invented. They tell me there is 100.000 people in the UK with MS of some kind, so obviously the number of people that wants to find a cure, are numerous. I am Norwegian, and I speak/read Norwegian, German, Swedish, Danish and English, and it is nearly a dis-advantage to me, because the information available to me on the internet is too big for me, but I do (as I suppose thousands of others do as well) read whatever I can come across about MS, because, of course I want rid of it, or at least something that may improve the quality of life for me. Which by the way is pretty low at the moment. If I was just to sit down and believe every word the doctors an MS-nurses tells me, i kick myself for not hanging myself in the staircase of my big, old house. Now I live in a bungalow, so I have not got that option any more. Joke aside (dark one, I admit) All the Proffessional people dont REALLY know how bad it is to live with an advanced form of an illness that everybody tells you cannot be cured. We, the patients know, and to discuss possible cures on a Forum MAY one day give us some of the answers we are seeking. Let's face it, at trial may involve a small number of people, experiences and information can be shared by thousands, even millions world-wide. Nothing wrong with thinking "outside the box". SHARE experiences and possibly useful information, take part, that is what a Forum is for!
Thorleif
18 Dec 2013 at 10:38AM
Oh, and by the way: If somebody feels like learning more about Combined Antibiotic Protocol, I found this quite good: 
http://www.thisisms.com/forum/antibiotics-f28/topic6557.html
Moyna
18 Dec 2013 at 12:43PM
Yes I agree with above and I don't take general comments personal in any way. There are probably many different factors that cause ms which is why no definite cause has been found. The Epsom Barr virus tends to be a big suspect. It must be some sort of virus or bacteria iif the immune system is activated.
The drug companies want to find an expensive cure not a cheap one. That can be the only reason why Ldn has not been given significant research.
There is ne news that the tb vaccine can help prevent an isolated attack becoming ms. If I was in that position I would insist on having the jab. For 2 reasons it has already proven to be safe and secondly I wouldn't want to wait 10 years to prove or disprove the theory when ms couldhave taken hold
Thing is will the trial be done or maybe not because not enough money to be made.
MOYNA
supaguy68
20 Dec 2013 at 8:49PM
Hi All!
For me, the end of a long working week; once I have written up my work and back reported I'll be off for the rest of the year.  I have had dive at my local MS Therapy Centre this afternoon (a "Dive" meaning a session of hyperbaric oxygen).  Hopefully this will give me some strength & stability in my legs but as things are, I continue to go down hill.
Mmm ... yes there is an air to the responses on this thread which I find entirely in tune and in keeping with The MS Society as it always has been.  Did you know that at one time, anyone mentioning LDN or Hyperbaric Oxygen would be cut off by the "Moderators".  How do I know this?  Because I know one of the moderators that had to do just that.  At least The MS Society has moved on a little from that, I suppose.
Yes, it seems that some people do not like what I say; really!  Cath, for one already knows that I am wasting my time and that my efforts with antibiotics are futile and useless.  Cath, if I had your foresight I'd have only needed to buy one lottery ticket tonight.  The chances of me winning The Lottery are neglegable ... but I still hope.
I had no idea what treatments that you were engaged in; I didn't mention them so could not ridicule them.  I will state that I respect anyone's right to hold a viewpoint (and express it) ... but I do not respect your view.  I reject the doctine of despair and I embrace the path of hope and enlightenment.  You are free to preach that "MS cannot be cured" and I am free to pursue any course that is open to me.  Whether someone used to be a roadsweeper, a brain surgeon or an MS Nurse ... it matters not to me when they are wrong.
Hey Moyna, I really do understand and have absolutely no trouble believing the attitudes and actiond of your NHS neurologist.  Here follows a cutting for a peice that always startles me and those I tell.  After the clip I will paste a link to the full exerpt:
One neurologist refused to look at the
improved follow-up MRI of a recovering patient when the radiologist was about to place a film on the
light-box. He apparently held up his hand and exclaimed ‘I can’t see it!’ Another neurologist told a
patient with primary progressive MS not to darken the door of his office again after she had
commenced antimicrobial treatment. Her EDSS had improved from 6.7 to 2 on his own assessment (an
improvement almost unknown in the natural history of untreated disease) but he had no wish to
examine the cause of that improvement.

http://beyondthebandaid.com.au/wp-content/uploads/2012/07/Sea-Changes.pdf
Earlier in this thread Thorleif mentions a link to thisisms if anyone really wants to find out about this; the pukka site for the combined antibiotic treatment is:   http://www.cpnhelp.org/
It maybe that the treatment I have undertaken does not work for me.  There is another You Tube video out there; in fact it's a serries of videos - a video log - with a very smart lady chronicling her experience doing CAP.  Her conclusion on the final log is that it hasn't worked for her.  She says that she has gained no benefit whatsoever.  Well, at least she tried.
There are a good few people at my local MS Therapy Centre watching how I am doing.  I would love to be able to be able to say "Hey, there's something in this: give it a go".  As yet, I am not in a possition to say that.  What I can say is that every one of those people, staff and clients, wish me well and are cheering me on.  I believe the moto of these centres is "Self-help is our way of action".
I am gonna have a little drink tonight and again around Christmas; I'll have to make the most of it because after Boxing Day through to New Year, I will be "Pulsing" a powerful antibiotic wich does not mix with alcohol.  A dry New Year's Eve for me this time.  I am gonna do my dammedest and give this my best shot.
G


Smacksblue1
27 Dec 2013 at 6:42PM
Go for it,  if you believe that whatever treatment/therapy your trying is going to be good for you it propably is, i'm sure a few rum and coke's tonight will do me the world of good ,who agrees? lighten up everybody and try some of this rum and coke  or whatever you fancy
Cheers
Mark.
supaguy68
28 Dec 2013 at 5:59PM
Hey Smacks,
This is what they call a "Deserted thread".  The reason that it has been deserted is that the were some logical common sense arguments put forward that were outside of the comfort zone that those that come here normally inhabit.  The very prospect of getting well is going to appear very threatening to some.  A decision has been made to boycot this thread en mass (I say "En mass" but there are only a very few here anyway).
Whether or not I can join you for a drink on New Year's Eve is still to be decided (may be taking meds that don't mix) ... but if I can - mine's a scotch & coke.
Happy New Year to you.
G
Thorleif
28 Dec 2013 at 9:46PM
You would really expect this thread to spark a debate?
I wish it would, because then we could get answers, because I refuse to believe that David Wheldons wife is the only MS patient in the UK to have tried this?
whammel
28 Dec 2013 at 10:17PM
These two threads covered anti-biotic treatment, but they are a couple of years old now.
http://www.mssociety.org.uk/forum/everyday-living/english-and-australian-mavericks

http://www.mssociety.org.uk/forum/everyday-living/protomyxzoal-infection-protopac-treatment


supaguy68
28 Dec 2013 at 10:44PM
Yes Thorleif
You are right, right, right many times over.  David Whealdon's wife is by no means the only person to try this.  Actually, the only reason David Whealdon used this type of protocol was that he was desperate ... it was not just some a patient, it was his wife that was dying.  And one other thing to remember here:  He (Dr Whealdon) did not invent this; no,  it was already patented by Drs Stratton & Mitchell of The Vanderbilt University Hosp in Tennessee.  They had already had successes there and their successes continue.
There are many people currently trying this.  There are many people that have succeeded.  There are many that have given up on the road and have fallen by the wayside.  I am trying it at the moment myself.  I cannot say that I am successful as yet but I am expecting to go quite a way yet before I can expect to reverse my situation.  Whatever I will report will be honest and truthful.  I am another ill person just trying to get well; I am another MSer just like you.  If we progress and get iller together, that does not make my situation any better.  I am looking for a way out of this for me ... and if I find it, I will be shouting as loudly as I can for others to follow.  Sadly though, I suspect that if I were to shout here, I would be duely and dutyfully ignored.
By the way, you mention " ... in the UK".  It doesn't mater where in the world you live, if it works, it works.
If you want to talk sensibley to people that are doing this protocol then you can: http://www.cpnhelp.org/
The thing about here is there is nobody here ... but for a few of the same people clicking each other's "Like" buttons.
There was a member earlier on saying what a wonderful organisation the MS Society is.  It is certainly a rich organisation and it is "Assumed" to represent us people.  Even my GP refused treatments to me earlier on in the year quoting the MS Society and MS Society resollutions.  I want and MS Society to fight for me ... not work against me.  There was a post on here about 18 month ago: http://www.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/word-it-sacked-8
I want an MS Society that would have rallied to that member's aid; mounted a legal challenge on behalf of that member.  All very well sending "Hugs" but hugs don't pay the mortgage or put bread on the table.  If I want help to fight against discrimination, The MS Society should be a big gun in that fight ... is it?  You know the answer to that!  When I wanted help to do a PIP claim, was the MS Society able to provide someone to assist?  No!  All they could advise was to go to Citizens' Advice.  The 2nd comment on this thread made a comment about " ... all the way to the bank".  Yeah, well you look up how much money The Chief Executive of this organisation gets ... go on!
There will be no debate here because they ain't up tp it!
Happy New Year when it comes,
G
jenko1972
29 Dec 2013 at 6:45PM
Hi
Supaguy68, i have been diagnosed for 3 years and have been going downhill real   quick in the past year. I agree with what you say i have seen numerous neurologists and go through about 30 minutes of tests and questions "cant walk straight, as wonky vision, tremors etc etc" every time. I then ask "what are you going to do about it?" To which i am always met with a blank look....great.
 i too am going to try the antibiotics in the new year, i wish you the best of luck i sympathise with your frustration.
I wish everyone a happy new year.
Nei.
Thorleif
29 Dec 2013 at 8:09PM
One obstacle for many people wanting to try it, or to find out if they are suitable for treatment is that they would need a regular contact to follow their development closely, to get doses right and so on. Mrs Wheldon shared bed with a fairly sharp doctor, so she would be fairly safe, but most of us are not married (not even engaged) to one, so we would need to build a circle of people with the right knowledge to back us up/make sure we get it fairly right with the dosage of the antibiotics, get MRI scans to follow the (hopeful) progress, and so on. I am trying to build such a circle now, and when I feel confident that that group is complete and willing, I am probably going for it. January will definetly be decision-time. Have you got the right team around you to do it, Supaguy68? Let's face it, this is not about buying 2.000 tablets and munch them for a year. It is about getting results, and getting them fast, so we can get a life again.
Thorleif
29 Dec 2013 at 8:18PM
Is Isola (Sarah) fllowing this thread?

supaguy68
29 Dec 2013 at 10:24PM
Hi there my friend!
Glad to learn that there is someone else here with enough gumption to get up while they can and get the      out of the way of that that express steam train that's bearing down on you like a fire-breathing reaper.
Couple of things before you commence antimicrobal therapy:
Firstly get it confirmed (in neurologist blood) that you actually have MS ... Yeah, I know they say that now but if you do begin to improve or recover, then they will say that you were misdiagnosed, you never had MS or you were actually Relapsing Remitting ... and now your just in indefinate remission.  Oh, you don't believe me?  Well just look at the link given here earlier by Whammel.  Read through that and you can already read the script.
Another thing is to do your homework.  Read up on cpnhelp.org what you might expect ... including getting worse in the first months of the protocol.
I am primary Progressive and I am doing everything that I dammed-well can not to allow this to suck me into a wheelchair.
Finally, let me say congratulations to you for at least pausing before following the rest of the lemmings here.
Good luck my friend!
G
supaguy68
29 Dec 2013 at 11:32PM
Firstly Thorleif , no, Sarah is not following this thread and will not be following it.  If you really want to know why I will post the link to show the descussion but she said that she found the people here just so rude.  The editor of cpnhelp.org described the people here (I think) as mean-spirited.  You can read for yourself what was very recently said.
http://www.cpnhelp.org/why_ms_society_and_its_me
If you want to go and buy a couple of thousand tablets and munch them ... you munch away my friend.  You mentioned  "Getting results fast".  I don't know how long you took to get where you are but I am guessing it was quite a while.  I got dx Aug 2010 and have been going down slowly but gradually.  The best I can really hope for is that I'll come back up the same way.  There's one girl doing CAP (under a doctor) ... she went fast and got really bad fast.  I don't think the doctor had much of a clue.  "Fast" is not a commonly used word a cpnhelp.org   If you really are looking for fast then maybe a spiritual healer may be a better bet.  I tell you now, my friend, the maxim on this protocol is "The slower you go, the easier it is".  Dr Stratton's words were something like: "As fast as you can ... but not so fast as to cause damage to yourself".
I mentioned in an earlier post the phrase "Comfort zone".  My guess is that you are gonna have to step outside that comfort zone.  If you find yourself doing this, then you will need the personality to be master of your own destiny.  You want a doctor?  Difficult enough to get one to prescribe a piddling thing like LDN.  Even if you got a doctor to prescribe, there's a good chance that they wouldn't know what they're doing anyway.  I am lucky in that I have actually got a doctor to prescribe; trouble is, only doycycline can be obtained in the UK easily ... so my other meds are without a script (I don't want to use azithromycin and metronizodol).  I actually know much more about this than that doctor.  My advice to you before you engage in this or any other therapy is to find out about it.  Discuss it with all the people that are actually doing it.  Join and partake with cpnhelp.org   Be prepared for the establishment to wash their hands of you.  In terms of monitoring ... well, you know which way you are going now, don't you?
jenko1972 will be ok with this because (s)he has already cottoned on that the NHS (or even private) has nothing to offer ... so (s)he realises there's not a lot to loose.
This is a long-term treatment; think of it a bit like treating TB or suchlike.  The last thing we need is people stopping and starting and making their own personal contribution to the cause of antibiotic resistance.
So, to summarize:
Join http://www.cpnhelp.org/
Read the handbook
Take part in the discussions
Consider your options ... including whether this is right for you (and whether you have the strength of character to actually do this)
One final word:
This protocol is based on the theory that MS is NOT primarily an autoimune disease.  David Whealdon has stated that in some cases the disease does progress and does then become truely autoimune ... when this becomes the case, antibiotics can no longer cure.
I suppose I better put in a disclaimer here:
Finally, I must add, I am not a doctor and have no medical qualifications whatsoever.  Nothing contained in this posting can be taken or implied to give advice, medical or otherwise.  Any individual must seek sound qualified advice before taking any substance or embarking on any course of treatment.
See you at cpnhelp!
G
supaguy68
30 Dec 2013 at 12:13AM
Hey ...
Why is it that my post just get endlessly delayed before showing ... but others here show straight away?  I certainly am no longer new here. I am certainly no spammer.  Is it that the MS estabishment does not like what I say?  Is it a case that you can say what you like but unless we approve of what you're saying ... nobody else is gonna see it?
Free speach bites the dust!
G
nindancer
30 Dec 2013 at 12:27AM
G - lots of stuff has to be approved by mods cos of the kitchen saga, it came up a few times and I only joined earlier this year ;)
supaguy68
30 Dec 2013 at 12:32AM
Yeah, well there are people above that have asked questions.  I have spent much time composing a lengthy comprehensive anwser ... and where is it???? Gone!
What's "The Kitchen saga" anyway?
G
supaguy68
30 Dec 2013 at 12:48AM
Guys ...
I've replied to your questions but the censors will not allow you to see my response.  Maybe you are not deemed clever enough to discern valid comment for yourself. Ah well  ...  this is what you have all grown to accept!
G
Val
30 Dec 2013 at 7:57AM
supaguy68 wrote:
Guys ...
I've replied to your questions but the censors will not allow you to see my response.  Maybe you are not deemed clever enough to discern valid comment for yourself. Ah well  ...  this is what you have all grown to accept!
G

Please note there are none of your posts awaiting moderation.
Val
[Moderator]
whammel
30 Dec 2013 at 11:58AM
Rather than constantly insulting other MSers because in your opinion they do not follow the true path, had you considered waiting until you actually have the treatment before preaching how wonderful it is? An honest account of your experience just might carry a little more weight than constantly telling us how inadequate we all are.
Oh, and it will be seen by wider audience if you post on "everyday living" and that way more of us can benefit from your insightfulness.

nindancer
30 Dec 2013 at 12:26PM
Well said Whammel!
After the time my GP told me that antibiotics were causing a physical nervous breakdown, I've avoided them like the plague, not funny when you start getting mysterious lumps and bumps. I didn't exactly overdose either, just a few courses in quick succession did very bad things to me.
Sonia x

I hope that we all can look forward and not back.

I am a firm believer that info should be free to us all, there are a lot of people making a lot of money out of those diagnosed with "ms" particularly CCSVI and diets etc.

Over the past 3 years I have encountered much, I have Googled away mostly every day, advertising is constantly in your face, I am lucky I can ignore it and carry on regardless, but many must fall into their trap.

A subject takes my interest, but before reading on, I will scroll to the end, and to read or learn further and often crucial information, it requires credit card details and some kind of fee. I can just move onto something else, but others are caught by that sales hook and then they reel you in.

Google is surrounded by  advertising there are huge quantities of money to be made from people like me with an incorrect MS diagnosis especially the diet market.

I have learned much over the last few years, but since switching search engines to Ask Jeeves in the last few weeks I am coming across new more localised information to the UK I haven't seen before.

I pride myself in the fact that the info on my blog is free without any advertising, as that in itself would corrupt the reason of why the post exists, what was my motive.

The making of money plays no part here. Us the public have the right to know about what can affect our health and both a misaligned Atlas and Candida totally messes with the whole of our being, when I walk, which will be sooner rather than later will prove.

But when that does happen I cannot go public, why? because those diagnosed with this made up condition, will not believe me because, the pain the balance problems are very very real, tremor spasm, poor eyesight, blood circulation I had them all, but as I sit here and type this, I can honestly say I m a normal person but just can't walk yet. But I am sure in 2014 I will, I am finally happy and very much looking forward to my future.
And I hope with all of your help, others will be able to feel the same. 

Candida and eating disorders,Anorexia, Bulemia and Binge Eating

Recovering from an Eating Disorder: Deeper Healing for Anorexia, Bulimia, and Binge Eating

Posted October 3, 2012. 
Overcoming an eating disorder can be tough. Disordered eating often follows a rollercoaster of restriction and binge eating.
Your relationship with food affects your hormones, neurotransmitters, immune system, and gut bacteria.
This can be true even if you have not been diagnosed with bulimia or anorexia.
You can help your body recover from disordered eating by correcting any imbalances in the gastrointestinal tract.
Studies have found a relationship between:
  • Gut disorders like irritable bowel syndrome (IBS) and bulimia. (1)(2)(3)
  • Eating disorders and overgrowth of the fungus Candida albicans. (4)
Constant deprivation caused by an eating disorder can delay the feeling of fullness, trigger cravings for sweets, and lead to anxiety. Healing the gut is the first step in the right direction to recover from an eating disorder and bring the body back into balance.
The gastrointestinal tract is full of neurons. So much so that many refer to it as the “second brain.”
While sheer willpower can keep us from eating foods that we know are damaged and missing nutrients, it can also keep us from eating foods that support our energy and mental focus.
If you have a disordered relationship with food, willpower itself eventually breaks.
This is because disordered eating is not just a psychological battle. Our relationship with food affects our hormones, neurotransmitters, immune system, and gut bacteria!

What’s Behind the Cravings

Eliminating food toxins, such as gluten, from the diet and cutting out refined sugars will naturally reduce the craving for sweets. However, when we restrict our diet for the sake of weight loss and limit consumption of health-promoting whole foods, we enter into a state of deprivation.
This can deplete micronutrients, such as vitamins and minerals. It can also change hormones in the body that signal satiety.
Deprivation leads to hunger. We are talking about a biochemical hunger that:
  • Sends out hunger signals
  • Delays the feeling of fullness
  • Emphasizes sweet foods
  • Makes us anxious
  • Interrupts sleep
Something called neuropeptide Y (NPY) is responsible for this hunger signal.
NPY is one of the strongest messengers in the body that cues hunger. When we are running on empty or restricting calories, this can trigger NPY.
Unfortunately, once NPY gets activated, it prompts the body to consume more food than is necessary. It also encourages us to make a beeline for the sugars and carbohydrates since our cells so easily absorb glucose.
With NPY in charge, it is all too easy to get entangled in a cycle of restriction and binge eating.

Healing the Gut Is Essential When Recovering from an Eating Disorder

Neuropeptide Y (NPY) can literally fuel an eating disorder. This is especially true when we feel guilt or shame about binge eating behavior.
Because NPY is like the force behind the curtain of disordered eating, it can be easy to mistake our desire to eat sweets and lots of them as a personal failure.
Restriction and extreme dieting causes NPY to build up in the tissue, telling us loud and clear to eat.
Whether you are dealing with binge eating, a dependence on laxatives, anorexia, or bulimia, the most important aspect of any recovery program is unconditional self-love.
Once we understand that very powerful signals are urging the body to eat beyond satiety, it can be easier to let go of destructive feelings like shame and guilt.
It turns out that overriding the NPY signal with our own willpower does us no favors.
This is because NPY does not only drive hunger. It also drives inflammation.
These neurons play a big part in inflammatory disorders, such as irritable bowel disease (IBD). (5) Because the nervous system talks to the immune system, NPY has been found in higher concentrations in those with inflammatory gut disorders.
Scientists even suggest that NPY promotes inflammation. (6)

Using the Body Ecology Diet to Help with Recovery from Disordered Eating

Our relationship with food is much like the relationship that we have with ourselves and with others. Any successful relationship makes room for flexibly, understanding, and love.
This is why the Body Ecology Diet teaches the principles of Uniqueness and Step-by-Step.
While we know how to recover the body from things like infection, gut permeability, and immune disorders, we must be gentle with ourselves in the process.
Too much restriction leads to a feeling of deprivation. Deprivation can:
  • Trigger the release of NPY.
  • Fuel disordered eating habits and binge eating.
  • Promote inflammation in the gut with increased levels of NPY.
We can follow the principles of the Body Ecology Diet without giving the body mixed signals:
1. Practice Intuitive Eating. The Principle of Uniqueness is about listening to your body’s needs and signals while choosing foods that support overall health and wellbeing. When choosing foods, the focus is pulled away from, “Will this make me fat?” Instead, intuitive eating asks, “How nourishing is this food for my body?”
With intuitive eating, there is more emphasis on health than on the appearance of health.
2. Make Fermented Foods the Star of Your Plate: Good bacteria do all sorts of wonderful things for the gut. This includes helping to heal damaged tissue and shutting down inflammatory pathways.  
For centuries, human beings have been culturing food and reaping the rewards of a robust inner ecology. The best fermented foods are made at home. Try eating a cup of fermented vegetables with every meal or drinking homemade coconut water kefir.
One tip for a quick, nourishing snack: Blend up a scoop of Vitality SuperGreen with coconut kefir, dairy kefir, or a Body Ecology fermented beverage.
Vitality SuperGreen is a predigested formula that contains greens, algae, and microalgae. Because it also contains beneficial bacteria, as well as a super-potent form of glutamine, Vitality SuperGreen can help to heal intestinal inflammation.
There are powerful biochemical signals at work behind eating disorders. As we encourage the body to heal physically, we also engage in a deeper level

Luxxlady's story her journey from Anorexia to the Candida diet

Friday, September 3, 2010

My Journey From Anorexia to the Candida Diet

I was introduced to a whole new reality when I was 13 and developed Anorexia Nervosa and later Bulimia. Food became my addiction and means of coping with family and everyday stresses a teenager feels. I was a perfectionist, lost in a sea of emptiness. I felt a hole deep inside myself, and I tried to console myself with the feeling of hunger and control for many years. Throughout the years I worked with psychologists, a psychiatrist, a nutritionist and in group therapy. Even after all of this, I found myself unable to live a normal life. Recovery is one of the hardest things I've ever had to face, and is still a great obstacle I continue to face daily. Living with an eating disorder for as long as I have, it made me start to consider the possibility that I would never be free from its tight grasp. I had tried to recover so many times without success, and every time was an epic fail! I am a person that sees things in white and black, so there is little room for in between. When I had decided it was time to try to recover, instead of eating healthy, I binged thinking..."I can finally eat now!" I wouldn't weigh myself for a week or maybe a few days thinking...."I was told to gain weight, this is good for me....I can handle this..."but then my eating disorder would creep back making me crazy, and I had to know what I weighed. So I would weigh myself, only to discover in horror the most awful number I could possibly imagine....I had probably gained five pounds or so in a week from eating so much. Then I would start the roller coaster all over again saying, "I'm not allowed to eat hardly anything tomorrow!". Needless to say, recovery didn't work too well for me, and I didn't trust anyone enough to share what I was doing to myself, because I was ashamed. I could talk about it as long as I was back on track and it was in the past, but I was never good about talking about the problems at hand. Anorexia controlled my life for nearly all of my teenage years.

About a year ago, when I was 19, I started to get more of a handle on my eating disorder. It was a struggle because all the years of starving had completely ruined my metabolism, so I had to stick to a low calorie diet just to maintain my weight. This was frustrating but allowed me to find some sort of balance. This was the first taste of normal eating I had had since I was very young. Although I worked out religiously almost everyday, and stuck to a strict calorie regimen, I was finding a plan that was actually manageable. During this time I did have my ups and downs with my eating, but they were much better than any other time since the start of my eating disorder.

I then stumbled upon a breakthrough called the CANDIDA DIET. I had never heard of candida or the candida diet, so I started researching it and discovered something very interesting. This diet is designed for people who have an overgrowth of yeast throughout their body (systemic), and thus are having many symptoms associated with it. It has a variety of different causes, but things such as long term antibiotic use (such as used for acne), birth control pills, toxins in food and air, and a sugar-rich diet are all contributing factors. There are numerous and diverse symptoms (feeling sick everywhere) associated with systemic yeast (leaky gut): abdominal gas and bloating, headaches, vaginitis, excessive fatigue, weight gain, mood swings, acne, low sex drive, difficulty concentrating, depression, cravings for sweets, diarrhea or constipation, itching, dizziness, athlete's foot, thrush, sensitivity to fragrances and chemicals and much more. Since I was experiencing many symptoms associated with candida, I made a command decision to change my life right then and there (black and white thinking) and went on the diet that day, as unprepared as ever. I would never recommend anyone else attempt this diet in this same fashion, I would suggest preparing for it and reading up on it first. After going on the diet, I was sick at first, because the diet is so restrictive, and I had been addicted to sugar, but after a couple weeks I started to notice a change, plus I lost a few pounds while eating more! I am happy to say that this is my 69th day of the diet....well, perhaps I shouldn't call it a diet, because for me it's more of a lifestyle change. I'm working to repair all the years of wear and tear I did from my eating disorders, and I'm happy to say I feel I'm finally on track!      

Candida - Thyroid Disease- a physical reason for mental illness includiing weight loss

If you suffer from a mental illness such as anxiety, depression, bipolar disorder or schizophrenia, you may have an undiagnosed physical disease. Read on to discover why your mental illness could have a physical cause. Thyroid Disease
Thyroid disease is a physical disease that can appear to be a mental illness. In hypothyroidism, there is an insufficient production of the thyroid hormone. Some of the physical symptoms include weight gain, cold sensitivity, thinning hair, dry skin, anemia, muscle aches & weakness. The mental symptoms include insomnia, hallucinations, suicidal thoughts and acts, depression, nightmares, paranoia, unstable emotions, suspiciousness and fear. In hyperthyroidism, there is an overproduction of the thyroid hormone. Some physical symptoms include weight loss, feeling overheated, diarrhea, infrequent or absence of menstrual periods, fast heart rate, shaking hands and hair loss. Mental symptoms include nervousness, insomnia, staring gaze, mood swings, impatience, hyperactivity, anxiety and depression.
Gluten Intolerance
Hidden gluten intolerance is a physical condition that can cause the symptoms of mental illness. Common physical symptoms of gluten intolerance include abdominal pain, diarrhea, constipation, weight loss or gain, hair loss and irritable bowel syndrome. Mental symptoms include behavioral problems in children, autism, Aspergers, learning disabilities, brain fog, anxiety, depression and even the symptoms of schizophrenia. In a person with gluten intolerance, gluten has an opiate effect on the brain, which can cause mental dullness and confusion.
Parasites Can Mimic Symptoms Of Mental Illness
A human parasite infection is a physical condition that can appear to be a mental illness. It is estimated that over 50% of Americans are infected with some type of parasite. Physical symptoms are numerous including chronic diarrhea/and or alternating with constipation, multiple food allergies, changes in appetite, sudden weight loss, muscle pain, sore intestines, muscle pain, gurgling intestines, anal itching, yeast infections, itching on the soles of the feet, foul-smelling gas, nausea/vomiting, dizziness, anemia, conjunctivitis (pink eye), palpitations and coughing up bloody sputum (in some cases). Mental symptoms include insomnia, anxiety/irritability, brain fog, depression and poor memory. You can find natural cures for parasites at my blog here.
Lyme Disease
Lyme disease is a physical disease that can appear to be a mental illness. Lyme disease is an illness caused by a bite from an infected tick. Early physical symptoms are usually flu-like symptoms, localized rash at the site of the bite, headache, fatigue and muscle aches and pains. Later physical symptoms include facial tics, pain or weakness in limbs, poor memory and concentration. Mental symptoms can include personality changes, symptoms of OCD, paranoia, fear, delusions on account of the effect Lyme disease has on the nervous system. If you have these physical and mental symptoms, get tested for Lyme disease immediately. Left untreated, Lyme disease can cause permanent neurological and mental damage.
Chronic Candida Infection
Chronic candida is a physical condition that can appear to be a mental illness. Candida is yeast that lives normally in the body. However, frequent use of antibiotics can destroy what keeps the yeast in check, which may result in an overgrowth. Some physical symptoms of candida are recurrent yeast infections, athlete's foot, stomach problems, craving for sweets and alcohol, acid reflux, low libido and itching. Mental symptoms include anxiety, irritability, restlessness, poor memory, brain fog, mood swings, manic depression, depression, delusions and psychosis. For more on chronic candida, including natural treatments, check out my article here.
Vitamin B3 Deficiency (Pellagra)
Pellagra is a physical condition that can appear to be a mental illness. A person with a vitamin B3 or niacin deficiency can exhibit physical symptoms such as muscle weakness, red scaly skin, loss of appetite and diarrhea. Mental symptoms can include dizziness, headaches and mental disturbances. Pellagra doesn't affect many in the US but is common throughout the world.
Vitamin B12 (Folic Acid) Deficiency
Folic acid deficiency is a physical condition that can mimic mental illness. It can occur after surgery that removes part of the intestine. This leads to malabsorption of the vitamin, which can cause physical symptoms such as weakness, paleness, mouth lesions and red sore tongue, restless leg syndrome, nausea & vomiting. Mental symptoms include moodiness, difficulty learning, anxiety, insomnia, problems with coordination, mania, hallucinations, paranoia and psychosis.
Hypoglycemia
Hypoglycemia is a physical disease that can appear to be a mental illness. Hypoglycemia means abnormally low blood sugar and it is a physical illness that mimics mental illness. Physical symptoms of hypoglycemia include weakness, shakiness, fainting and excess sweating. When blood sugar drops, mental symptoms can include anxiety, emotional outbursts, mood swings, excessive crying and the appearance of being under the influence of alcohol.
Heavy Metal Toxicity
Heavy metal toxicity is a physical condition that can appear to be a mental illness. Mercury, lead and arsenic are the most common culprits in heavy metal toxicity. Those with mercury fillings may be at risk. Also, heavy metal toxicity can result from what a person is exposed to at work or during leisure activities. Lead toxicity can lead to physical symptoms such as gastrointestinal problems, headache and convulsions with mental symptoms including anxiety, delusions, nightmares and mental confusion. Arsenic can also produce stomach and neurological problems as well as increased skin pigmentation and a garlic odor on the breath. Mental symptoms include dementia, apathy and anorexia nervosa. Those with mercury toxicity may have a metallic taste in the mouth, an overproduction of saliva, tremors and stomach complaints. Mental symptoms include depression, anorexia, irritability and psychosis.
Histadelia
Histadelia is a physical disease that can appear to be a mental illness. This is a physical condition characterized by too much histamine in the blood. Histadelia affects men more than women. It is estimated that 15-20% of patients who have histadelia have been inaccurately diagnosed with schizophrenia. Physical symptoms include frequent colds, allergies, fast metabolism, thin build, low pain tolerance and excessive sweating. Mental symptoms include strong suicidal tendencies, obsessions, mind blanks, severe depression, hyperactivity and phobias.
If any of the above physical conditions seem familiar to you and you believe you may be suffering from one, do more research and arm yourself with knowledge before going to see your doctor. It is important to get an accurate diagnosis of a physical illness to rule out mental illness.
Sources:
http://www.alternativementalhealth.com/articles/causesofschizophrenia.htm#Wheat-
http://www.medicalonly.com/2008/03/14/mentaleffects_thyroiddisorders
http://gluten-intolerance-symptoms.com/http://arthritis.webmd.com/tc/lyme-disease-symptoms
Published by Jaime A. Heidel
Jaime is a freelance writer with a passion for natural health, holistic healing and alternative medicine. Her mission in life is to help others find natural methods to heal mind, body and soul. She is th...  View profile

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  • Derek Gray 6/14/2013
    I'm glad you wrote about this. Something about mental illness is obviously being missed , especially when antipsychotic medication isn't helping. Thanks
  • Cheri Majors, M.S. 5/21/2013
    This is excellent Jaime! Thanks!